Donna’s Story

Those of us who had the pleasure of knowing Donna personally will forever be blessed with great memories. For those who didnt meet her here is her story… the first part is in Donna’s own words written at the beginning of 2010 and the second part is written by me, her husband Az.

Donna sadly past away on 2nd July 2010 whilst waiting for a third heart transplant. Donna is inspirational to so many people in the UK and abroad. She used to help and council people who were going through similar experiences whilst going through rough times herself. She campaigned for organ donation constantly and was a fantastic mother and wife. She will be missed by so many but her legacy goes on in this website and the campaign she inspired.

My name is Donna Mansell, im 26 years old and live in the uk with my little girl leonie and husband Aaran. Im currently in rejection of my 2nd transplanted heart, im about to start radiation therapy and am hoping to go back on the list for heart transplant number 3.

BACKGROUND STORY

I first went into heart failure 33 weeks into my pregnancy and was found to be suffering from dilated cardiomyopathy i was in serious trouble so the doctors delivered Leonie by C-section and tried to manage my condition for 12 weeks without success….
I was then put on the list for transplantation after the Rigourous assessment process. On Nov 2nd 2002 I went down to surgery wondering if was ever going to see my baby girl again but I was in the safe hands of the man we transplant patients at the Queen Elizabeth Hospital-Birmingham know as “god” aka professor Robert Bonser.. if anyone could save me he could. ………… and he did!

The road to recovery after my transplant was hard and it was very weird getting used to the fact that I had someone elses heart inside me and that someone had died. Getting used to being a new mum, taking loads of tablets, becoming a regular visitor at the QE, and, having those vile neck biopsys to check for Heart rejection has been hard but im still here fighting strong.

I developed rejection a fair few times but luckily the doctors managed to get that under control …… and life went on until December 2004 when my little brother James developed cardiomyopathy and was very sick indeed. James had to have a LVAD fitted because his heart was in such a bad state, he was also added to the list for transplantation.

James was taken off the list several times due to infection and being too ill but he eventually got his heart and he began to recover … happy days.

THEN, in April 2005 I started to feel unwell again I was always short of breath and could barely walk, tests were carried out and i was found to be in cronic rejection and it couldnt be fixed. I had developed donor specific antibodies that were attacking my heart the only treatment was another heart transplant, which had never been done before at the QE, so again i went through assessment and went back on the list and after four months I recieved heart number 2 and soon got back into the routine … i have to admit the second time was easier as i knew what to expect and i seemed to recover quicker than the first …..

Life carried on, i got a job and remained healthy taking my tablets to keep the clock ticking over.

In 2007 my world fell apart after my brother James had died following transplant complications… James was my best friend my confident and my special brother ….. I miss him so much the world is a cruel cruel place but i have to fight on for him x

During this time leonie was also diagnosed with dilated cardiomyopathy which she takes medication for and is doing really well ….. we have a fault in the TNNT2 gene which has caused all our problems.

In january 2010 i started to feel unwell again I was having funny turns where it felt like my heart was going very slow and felt like I had blacked out so back to the hospital I went and they fitted a 24hr tape …..no biggy so i thought.
29th jan 2010 I recieved a call from Donna the transplant nurse to say that during my funny turns my heart was going very slow and I needed to go into hospital as it wasnt safe for me to be at home …then the panic set in …….. I would be monitored over the weekend then have a pacemaker fitted on the monday 1st feb. I sat in hospital all weekend scared to death my heart was going to stop but I knew I was in the right place.

It turned out i have three furred arteries and the reason I needed a pacemaker was because of these anti-bodies that are attacking my heart … they have already ravished away my electrical system of the heart and my only options are radiotherapy to kill the nodes that make the antibodies and re-transplantation …… im scared to death … I dont want to die my little girl needs me to be here with her so im hoping and praying professor bonser can fix me …. at present im using a wheelchair, sleeping loads and praying for a miracle … the doctors wanted me to cancel my wedding but I just cant so we cancelled the reception and are just having the wedding ceromony …. I love my family so much and i will fight this ….love my baby Leonie and hubby to be Aaran soooo much … i have a lot of people rooting for me so i have to do it …… im a strong believer in mind over matter my head wont let my body give up xxxxx

AND ONE THING I WILL BE ETERNALLY GREATFULL FOR IS BOTH MY DONORS AND THERE FAMILIES FOR GIVING ME THESE PRECIOUS GIFTS XXX WITHOUT THEM I WOULD NEVER HAVE GOT THIS FAR XX GOD BLESS

Donna lost her battle on July 2nd 2010 and leaves her husband Az (Aaran) and her Daughter Leonie.

Donna’s Montage.

Donna created this montage to tell the story of her life up until 2010 including the loss of her brother.

This is Donna Mansell’s story.

Written by me, her husband Az.

Its May 2008. I’ve been working 7 days a week, 10 hours a day running a kitchen for a local pub. All my kitchen staff had left due to arguments with the manager which left me to do all day everyday on my own. I was tired, miserable and a lot of the time lonely. Along came Mike. He had applied for kitchen work a few times but his phone number got lost in the myriad of notes and invoices on the notice board at work. This particular time he decided to walk in, a pushy move which worked for him. I liked his attitude and his perseverance and i thought enough was enough working on my own. We took him on and started him that week.

Getting to know mike he showed me a tattoo he had on his back with the word “Juffs”. I asked him what it meant. He explained that it was his best friend James’s nickname who had died recently not long after having a heart transplant. He showed me a picture on his phone of another tattoo with the word Juffs on. I asked who that was and he told me that it was his friend, and James’s sister, Donna who had also had heart transplant. I cant remember exactly what i thought at the time but i can remember feeling sorrow for Mike as him and James seemed to be very close friends. At that time i couldn’t even begin to imagine what it would be like to lose someone so close.

A few weeks later on a night off i decided to pop into the pub for a beer. I was chatting away to someone as i went to the bar looking into my hand counting out money. I looked up and stood in front of me the other side of the bar was someone i had never seen before. Brunette hair, a massive smile and ‘those’ cheek bones. I thought christmas had come early. I could barely order my drink.

The next day i was working with mike and asked who it was. Mike told me who was Donna and that he considered her his sister and also…. “don’t even think about it!” He also told me she was with someone which put a dampener on things.

A couple of days later i was working in the kitchen and Donna was working on the bar. I was cutting salad and the kitchen door opened, I felt a tap on my shoulder and looked up. Donna had tapped me with a dessert spoon and said “where do these go?”. I said “excuse me love, you cant come in here and spoon me, we haven’t even been for a drink yet!” she left the kitchen laughing her head off. That little one liner stuck with us until the end! It didn’t strike me till later that it was a long way to walk from the bar with just a dessert spoon and ask where it should go..the huge kitchen sink maybe? That was Donnas way of breaking the ice and struck off a very strong friendship.

After that we would finish work around the same time and sit out the back of the pub talking and chatting. I fancied the pants off her but didn’t want to do anything because i knew she was with someone. Eventually she started opening up about her life, about Leonie and her heart transplant and her brother. She also spoke about her current relationship. They had grown apart and where just co-existing. She would stay up all-night in the living room until he went to work then she would go to bed. I remember thinking that just wasn’t fair, she had been through so much and she was just existing and living each day as it comes. She told me about her favourite film “The Bucket List” and that she wanted to do one and do as much stuff as she could…one of which was to get married.

We carried on our friendship for a while then one night around kicking out time we both went to get up from our seats. I don’t know who moved forwards first but that was our first kiss.

A couple of weeks later we were both working again. I was chatting away to Donna on the bar when she received a text. Donna started to cry, it was a text from Sharon the transplant co-ordinator at the QE Hospital. Donna had heart rejection and the text said “pack your bags and come into the hospital”. That was the first time the seriousness of her condition dawned on me. I went to visit her in hospital while they battled to get her rejection under control, little did i know that would be the first of many visits to what she called East 2 Bosnia.

I struggled to get and see her as much as i wanted to because of the hours i worked. Even at that early stage of our relationship it was affecting me. I spent most of my time worrying at work. Then one day the kitchen door swung open and it was Donna. The hospital had got her rejection under control and sent her home, she arranged a lift back to the pub to surprise me. I’ve never felt such relief, the little bugger!

A lot happened over the next year, our love for each other grew stronger, i earned Leonies trust, met all her friends and family and Donnas previous relationship had come to an end a while back. Mikes approval was taking some doing though, he considered himself her brother and I didn’t think he approved of me for Donna. As our bond grew stronger, unfortunately Donnas health grew weaker. Hospital trips became part of our routine, id even set aside part of my wage packet each month to go toward traveling to the hospital. One day in particular Donna felt really unwell. I tried to convince her to call for an ambulance and she said she was fine just feeling a bit sick. Shortly after she fell really unwell and we called for an ambulance, they came and took us both straight to the QE. I slept that night on the waiting room floor not knowing what tomorrow would bring. I woke to a text from Donna asking where i was, i went to her ward and gave her a kiss. She said she was safe now and that i should go home to sleep and come back later, which i did and they sent her home later that day. I’ve never felt so much emotion for anyone before and this was taking some getting used to!

Although she was back home she found herself very short of breath all the time and struggled to get up the stairs to her flat. Donna asked the housing Association to move her somewhere more suitable, they refused. This prompted a campaign by Donna to get her new house. She went to the local newspaper, started a facebook group and contacted her local MP.

During her next hospital stay Donna mentioned getting married. A whole range of thoughts and feelings flooded my mind. I was over the moon that someone had asked me to marry them, i also thought that in normal relationships couples tend to wait longer before even thinking about it but then this was no ordinary relationship. I said yeah, lets go for it! Not the most romantic of proposals i know, but then it didn’t matter to us. Donna spent the rest of her time in hospital planning every last detail of the wedding which we agreed would be the 17th December. She practically organized the entire day its fair to say she started turning into bridezilla!! When she returned home we went to see the vicar Owain bell. He explained prices and how the day works and that our banns would be read in church. Owain had known Donna and james from school and it was him to conducted the funeral for James.

During another hospital stay Donna, feeling a bit low, felt that i wasn’t quite as sure about getting married as she had thought hoped. Im not very good with speaking about what I’m feeling and thinking, it wasn’t the wedding that was the problem, it was the stress and worry over her health that was affecting me. Coupled with money issues and a few other issues Donna, strong headed as always, decided to call the wedding off. Once she got something into her head it was very difficult, nigh on impossible, to convince her otherwise. So that, as they say, was that!

Good news did come though as Donnas campaign for a suitable house had proved successful. Our local newspaper, the Kidderminster Shuttle, got in touch with our local MP and between them convinced the housing association to give Donna a house. In December 2009 we moved into our new 3 bedroom house complete with stair-lift! Happy Days!

On a monday and tuesday (when not in hospital) Donna used to visit kemp Hospice which is a local charity that offers care to people with terminal illnesses. Donna used to joke she was the youngest person there and she often got mistaken for a volunteer!! One day she was asked to pop into the office as there was someone there that wanted to speak to her. It was Owain Bell the vicar. He spoke to her about the wedding and told her that he knew how much it meant to her to get married and that he wouldn’t leave there without her saying yes to putting the wedding back on. He even told her that he would waiver any cost for the church, service or bell ringers. He just wanted to see her get her wish. Donna phoned me at work and asked if i wanted to do it, straight away i said yes and we agreed to tie the knot on february 26th 2010.

At that time, with the new house and new date set, we couldn’t be happier.

Our first christmas in the house was the beginning of Donnas deteriorating health. Donna had visited a dentist to get a wisdom tooth removed. Not long after, during christmas, Donna was in agony, her face had swelled and she couldn’t eat anything. The doctor kept prescribing anti-biotics which did little and as it was christmas, getting anymore help was difficult. After a difficult christmas Donna visited the doctor and an x-ray was done. It turns out the dentist had left two fragments of tooth in the gum which where causing infection and due to her transplant she would need to go into hospital to have them removed. It was there that they realized that Donnas body had been creating antibodies which were attacking her donor heart.  Another transplant may be the only option but would Donna be too ill to go on the list? That was anyones guess.

When Donna came home kemp hospice gave us a wheelchair on loan which was a massive help. Donna didn’t like it at first because she didn’t want to feel useless and have to rely on me. Her doctor also setup a constant supply of oxygen bottles just in case. Of course Donna pimped the wheelchair out in leopard print!

During this time Donna had struck up a friendship with my younger brother Luke. He came as a bit of a relief to me as all this stress had taken its toll on me and all my fun loving spirit had gone out the window. Luke brought the fun back into Donnas life, i remember thinking they were like the two heckling puppets in the muppet show. Luke was also a great help in that i knew he would be around when i was at work which took away alot of worry. We gave Luke a wedding invitation and gave him one to pass onto my parents. I hadn’t spoken to my parents for quite a while but felt i should invite them. About a week later i asked Luke if they were going to come to the wedding. He told me that they had said they weren’t going to come because they didn’t want that to be the first time they met Donna.

That week, while i was at work, Donna got in a taxi and turned up at my mothers door. She wouldn’t take no for an answer and my mom instantly fell in love with her down to earth personality. That simple act is something i will be eternally grateful for, not only had she broken the ice with my parents but she brought us back together again.

Our wedding day is a point in my life i will never forget. Me, being last minute.com, still had items to get for my suit! Donna was being pampered and poured over back at the house while i was running round like a blue arse fly trying to get ready in time. My brother Lee took me and Luke to the church and as soon as i got near the door the nerves set in. It would be fair to say i was sh*ting my self! I had never been in St Marys Church before and inside it is stunning. I couldn’t believe the turn out either, Friends and family packed the church with people stood up at the back. I stood at the front shaking like a leaf and then heard whispering from the people behind me, Donna was there, then the music started playing and i was trying to look behind me through the corner of my eye. Donna was still using the wheelchair at that point but on this day she decided to brave it and walk down the aisle. Her granddad, who was giving her away, helped her as much as he could. I could see she was struggling and i just felt helpless unable to help her but i could see the determination in her eyes and i started willing her on under my breath.  She looked absolutely beautiful and the image is burned into my memory.

She made it and held my hand, Owain said we could sit for the rest of the service which brought relief to both of us!! Donna and I couldn’t stop smiling at each other while Owain was reading. We had both written our own wedding vows which begun with me reading mine…nervous much!! Donnas vows were so moving that she couldnt finish reading them through tears and Owain stepped in to read them for her. The final hymn we had to sing was “Morning has broken” …Oh Owain, what had you done! Anyone who knows me knows that im a sucker for innuendo and Donna was only too aware of this. The chorus includes the words “the purple headed mountain”…the purple headed what??? i could see the verse looming in the songsheet and i kept thinking “hold it together boy!” When we got to the chorus i could hold it no more, i had to bite my lip togther to stop myself from bursting out laughing, Donna spotted straight away what i was finding funny and started doing the same thing. One or two choruses would have been fine but im sure we had to sing it like seven times…was Owain having a laugh? Donna uttered under her breath..”I’m gonna kill you when we get out of here!” ha ha!!

The rest of the wedding went without a problem and the guests wooped and cheered when we kissed. You can see from the photos how happy we looked walking back down the aisle and Owain pointed out after the wedding that as we were walking out of the church the sun started beaming through the windows. We were finally married and thanks to Owain and everyone who helped Donna had got her dream.

Married life was great, if we were in love before, we certainly were now! Even the wheelchair and hospital trips didn’t put a dampner on it.

I woke up one morning to a strange sound. Not really a sound, more a feeling of air pressure or a dull thud on the bed. I thought i was just hearing things as donna was laying right next to me. Then i remember thinking, why is she lay on me with her back to me? I jumped up and looked at her, eyes wide open she was gasping for breath. I raced around the bed and grabbed the oxygen and put the mask on her, i ramped the dial all the way up then back down again to normal. She was still struggling for air..i wanted to panic but i knew i couldnt.. i grabbed the phone and dialled for an ambulance. I knew as i spoke to the operator that they werent going to get there in time, i tried to follow her instructions and then noticed Donna turned blue. I needed to do something fast. To this day i have no idea what i did but something happened when i turned Donna on her side. She coughed back into life and asked to be sat up. I sat her up and gave her oxygen. She was dazed confused and had no memory of what had just happened. Minutes later the Paramedics got there and shortly after she was taken to Worcester Hospital. They had no idea what caused this but guessed it could have been a drop in blood pressure. This was the first of four of these attacks, three of them alone with me and one in the hospital.

Donnas health though took another nosedive and the hospital finally sat us down and told us that the only option would be transplant. Before they could that though Donna would need another transplant assessment and they had decided to do a ten week course of radiotherapthy to destroy Donnas lymphatic system to get rid of the anti-bodies. Scary times ahead.

Donna started her radiotheraphy which left her very tired for days afterwards. Good news did come though when the transplant team told us that they were going to list her on the transplant list but, they explained, it wasn’t going to be easy to find a donor heart and there was a chance she wouldn’t make the operation. We had to try. Donna completed her radiotheraphy and shortly after we were given the news that it had worked. Now all we needed to do was sit back, enjoy family life and wait for the phonecall.

In May Donna got a chest infection. Doctors gave her antibiotics and a week or so after it had cleared up.

In June the infection came back, once again anti-biotics. It got so bad that id had enough. We called a medic who visited the house. She told us to go to the Doctor who listened to her lungs and told us to go to Worcester immediately. Donna had Double Pneumonia and it needed immediate attention. They explained that she would be in hospital for a about 5 weeks and Donna was gutted because she would be in for her birthday. Shortly before this had happened we had been granted a mobility car which meant i could visit Donna everyday. I was tired and scared, i was getting up in the morning, getting Leonie ready for school and taking her, going to work then going up the hospital to see Donna (Leonie was spending the evening with Donnas friend until i got back) everyday. It would have been so easy for me to complain but i felt that was nothing compared to what Donna was going through.

On July 1st i went to see Donna as normal, this time with Leonie. We had our tea together in the restaurant and Donna did leonies hair. When i got home i continued to text Donna as normal and we joked around about what we were going to do when she got home. Donna had been making progress and was starting to get better. I sent Donna a goodnight text as i had to get Leonie up for school and we both said Love you and i went to bed at about half 11. At 3am i was woken to my phone ringing. It was the phone call no one ever wants to receive, Donna had passed away. I could feel the world crashing down around me. Its a feeling i cant describe.

July 14th was Donnas birthday and a pub full of friends and family let off balloons for her. It was also the day i launched Donnas Dream. Donna spent pretty much all of her time whilst she was in hospital speaking to other people in similiar situations, campaigning for more organ donors and doing what she could to spread the word. Donna’s Dream aims to continue doing what Donna started with the added campaign for organ donation education in schools.

From the smallest seed grows the largest tree

I love you always my wifey, my muse.

Az xxx

You can read Donna’s Journal by Clicking here